Friday, March 29, 2013

Sooo Excited!

I woke up this morning after a very restful sleep. As is my usual routine, I reached over beside me and grabbed my iPhone.  I have an app on my phone called "Sleep Cycle". You turn it on before you go to bed, and you turn it off when you wake up, or, you set it to wake you up at a certain time. It analyzes your sleep based on your movements. It can somehow detect when you're in a deep sleep, awake, etc., then, it gives you a percentage of how good your sleep was. The percentage I woke up to was 74%.  Not bad at all, but it could have been higher. Must have been because I got up about 3 times to go pee.

That said, that is what this entry is about. A year ago, as I've said time and time again, my life was changed when I received my kidney transplant. And now, a year later, dialysis seems like a distant memory. Just the other day, when I went to the hospital for an appointment, I stopped by my home dialysis unit.  I greeted Meagan-the unit's secretary/admin assistant. Then I went to see my dear nurse Rose. I miss her. Hair hair is longer now-way past her shoulders. She's always had a short bob. I mentioned, I checked my phone. I saw a text message. It was from my friend SB. She has msg'd me to inform me that she got "the call". She was on her way to the hospital because a kidney was available for her. She just needed to go to the hospital and do all of the appropriate tests to make sure the kidney would be suitable for her.  I was elated when I saw this message. She's young like me, with only a couple of years separating us. We both discussed the frustration that is dialysis just a week or two ago. And now, here she was..rushing to the hospital to hopefully get a transplant.

Yes, I said hopefully. Just because you get the call, it doesn't mean it's 100% a "go". Maybe the kidney wouldn't be suitable for her. Maybe she has a cold and cannot go through with the surgery. Who knows. But what I did know is that today, on Good Friday, she got the call..and I prayed that it would be her time.

I texted her anxiously after the noon hour, craving more info. No updates yet. She was going to go to her hospital room and get some much needed rest-especially after flying out of bed early in the morning to go to the hospital.

Later on in the afternoon, SB called me. Everything was set-she was getting her appropriate pre-transplant medication via IV..and the surgery would happen in a couple of hours!! I couldn't be happier!

By the time I type this, SB is very much out of surgery, or close to it. I cannot wait to see her, and hug her, and kiss her, and probably cry too.  I'm just soo happy for her. She's been on dialysis for a long time..and it was definitely her turn.

I haven't forgotten that somebody else is not here..and because he or she is no longer here, SB has a chance at a more normal life.  Wherever the family is who lost their loved one...I'm thankful that in the end, they agreed to allow their loved one's organs to be donated...or even to the person him or herself who had lost their life...thankful that he or she made the decision to have their organs donated.

This is so powerful.  SB is my friend, and I'm thankful that she is getting a kidney. But there are plenty of other people who will be impacted by the person who passed away. Other organs will be donated to other people who have been waiting for the call.  It's just so powerful to me.

I've said it once, and I'll continue to say it. All the time.  Make your wishes known to your family, sign your donor cards, register online to be an organ donor at

I can't wait to see and talk to my friend.

Sunday, March 24, 2013

Sh*t Medical Professionals/Staff Say to patients..

I don't know about my readers from around the world..but what I do know is that it's not just me. Do you ever get asked questions or told things that you just stare blankly at the person talking to you like...what..? Now don't get it twisted. I love 95% of the medical professionals I come across. But the truth is..I've made none of this up. Please don't send me angry emails, medical professionals.

So..what medications are you on?
It doesn't matter if you're seeing 10 doctors in a single day-I promise you that each and every doctor will ask you this question.  Maybe even twice. The reality of it is, my medication list is right in front of you. It's on the first page of my chart.

So how much pain are you in on a scale of 1 to 10?
I'm sorry..what did you ask me? I couldn't hear you over my own screams and cries of pain.

So tell me about your history.
Man! My history is quite vast...maybe you can skim through my chart and I'll fill in any pertinent details if necessary??

So I'm going to tell you what I know about your history.

I know your appointment was scheduled for 9:30am, and now it's 1:00pm. I apologize. The doctor is running behind.

Do you have insurance?
Why? So you can put me on the more expensive medication that is equally as effective as the less expensive one? Lol

And let us not forget about the magical person who appears out of nowhere when the words "we want to admit you to the hospital" are uttered by the doctor.
Hello, can you sign these forms? Do you have insurance for a Private or Semi-private room?

8am: Here's your medication!
10am: Here's your medication!
12:pm: Here's your medication!
4pm: Here's your medication!
6pm: Here's your medication!
8pm: Here's your medication!
Is it just me, or do you feel like you're taking meds 20 times a day when you're in the hospital? I assure you, neither myself or any other human being takes their medication 4 times a day when they can just as easily be taken once in the morning and once at night. I asked my pharmacist.  He said it was ok. (This, of course, doesn't apply to all your labels and take as directed lol)

Doctor 1: You can go home today! 
Me: Yay! *gets ready to go home*
*30 minutes later*
Doctor 2: Oh, no no no. I don't know why that doctor told you that you can go home. No you have to stay at least a few more days.
Um, guys..can you all SPEAK to each other and make a collaborative decision and NOT get my hopes up like that??

On the flip side..
Me: *writhing in pain*
Doctor: Ok! So you can go home now!, actually.  I cannot. But thank you.

Nurse: *jams iv needle into your hand, blowing your tiny vein 8 ways from sunday*
Nurse: Oh..I'm sorry that happened to you.
Haha I love this one. Not "I'm sorry I blew your vein!" It's "I'm sorry that happened to you".  Always remain neutral...and if blame must be vein blew because I flinched.

What "not-so-funny then, but I can look back and laugh at it now" situations have you been in?

Saturday, March 23, 2013

The never ending tummy troubles saga

I went to see the specialist on Wednesday.  Now they're not so sure that I'm still suffering from C. they think it might be gastritis. So, in addition to the CT scan I have scheduled, I have a colonoscopy scheduled as well. Man oh man do I have a fun filled couple of weeks ahead of me!

In the meantime, my pantoprazole has been d/c and replaced with lansoprazole. I mentioned that I'm a fan of the lansoprazole simply because it just looks so...fashionable!

But alas, I've been taking these since Thursday morning and I haven't noticed any miraculous change in my stomach pain. It's just so..unpredictable. At least if I could pinpoint a certain food or something that was causing the pain, I could avoid such foods until this issue is resolved, and at least be able to go back to work..! Ugh.

To be continued....


I forgot to mention that I'm on instagram!

Click on this link to check out my instagram.
And, as always, you can click on this sentence to check me out on twitter.

Warning, I post silly stuff on both my instagram and on my twitter which are not always lupus again, I've always been about the LIFE of a 20 (now 30) something with lupus, right?


Wednesday, March 6, 2013

Ok..seriously? Leave me alone.

It has been weeks since I've been to work.

My Vancocin has been increased since I last saw the doctor 3 weeks ago. I saw them again last week.  I can't really eat anything without suffering from moderate to severe stomach pain and lower back pain right afterwards. It wasn't this way during my trip (thankfully). When I was on the flagyl, this never happened.  Heck, before I was treated with anything, this didn't happen-it was the almost sudden onset of severe stomach pain that caused me to go to emerg and therefore discover I had this bug.

I called my transplant coordinator- she's away but there was a stand-in.  I asked what to do about the bad stomach pain, and he didn't have a definite answer for me except to avoid spicy foods, try and eat whatever works for me, and just go from there.  I cannot blame would he know what to say? My transplant coordinator is returning later this week and he said he would pass my message on to her for her advice.  I'm back to the ID doctors next week.

I don't know what to do. I hate missing so much work.  I know in some of the previous comments I've received I've heard of the horror stories.  I felt a bit lucky that I wasn't going through such things..but surprise! Here they are.  The doctor is also going to order an ultrasound of my stomach to make sure there isn't anything else going on down there.

Readers who had C-Diff-- did you experience severe pain after meals? What did you do??
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